I learned so much blogging about Pathological Demand Avoidance in our family, I wrote a book [Giveaway]

With Steph Curtis, SEND blogger

We’ve known SEND blogger Steph Curtis for over a decade. She’s the mother of two teenage girls now aged 18 and 16 who began her blog, "Steph's Two Girls" on the day her younger daughter Sasha was diagnosed with autism at age two. Steph’s research led her to understand her daughter has Pathological Demand Avoidance (PDA), something many autistic children struggle with.

The original intention was to keep the blog as an online diary; a place to record answers to questions that Steph was confronted with every day. One reason was to avoid having to repeat herself in various appointments, but she wanted to provide a way to remember everything that had happened in the early years, as well as everyday challenges from that point on. Steph also wanted to explain how Sasha‘s behaviour differed from other children of a similar age, realising that to others, it might come across as typical toddler tantrums.

For the past 14 years, Steph has continued to share insights from their family life on her blog, including the challenges of an education system unsuitable for her child and many others. Now she has released a book called PDA in the Family* and has kindly written for us about it, as well as offering a free copy to a reader - form at the end.

Why I wrote PDA in the Family by Steph Curtis

PDA in the Family shares our family life from the day our younger daughter was diagnosed as autistic. It is honest and open, covering aspects of our experiences such as the diagnosis process, schooling, anxiety and mental health, sensory issues and relationships. The book also illustrates how we’ve changed our thinking from our original parenting plans, to how we ended up living, to enable us to have a calm, happy family.

A few months after the autism diagnosis, I began to meet up regularly with other parents of autistic girls. Each time we met, I would think that my daughter sounded somewhat like their girls, but in many ways quite different. The usual strategies suggested for autistic children at that time didn’t seem to work for our girl. Sasha seemed to display more extreme emotions than our older daughter and refused to engage in many activities, even those we knew she enjoyed.

So I searched the internet to make sense of what was happening. Eventually, I stumbled across the words ‘Pathological Demand Avoidance’. That was our lightbulb moment. We realised that the characteristics of PDA fit our daughter more accurately than the overarching autism diagnosis had.

Steph has a shoulder length bob with a centre parting with greay highlights and a magenta top
Steph Curtis

What is PDA?

PDA stands for Pathological Demand Avoidance, a type of autism. People with PDA will often have extreme anxiety makes it hard for them to comply with demands. Demand avoidance is something many autistic and non-autistic individuals experience, but a PDA profile means they avoid even simple, everyday demands or rules many other children easily manage. It’s hard to describe PDA in just a few words but in a nutshell, PDA individuals are said to resist and avoid the ordinary demands of life and to use social strategies as part of the avoidance. They appear to be sociable, but don’t understand social rules. They can often be comfortable in role play and pretend, sometimes to an extreme, and excessive mood swings and impulsivity are key features.

The use of the word “pathological” is often discussed and rejected but I believe it was originally chosen to encapsulate how the resistance and avoidance aspects run through everyday life. This is not a case of individuals simply “choosing” to not do activities or demands that are a little bit hard, this is about PDAers finding the challenges of small, everyday actions (that many other people would not struggle with) too difficult to overcome. The characteristics and ways to help PDA individuals are described more fully on the comprehensive website set up by the PDA Society

Deciding to write a PDA book

Around seven years ago, Jessica Kingsley Publishers asked if I would write an advice book for parents about living with PDA. Initially, I didn’t feel comfortable with that proposal because I know that everyone’s situation is different and I didn’t feel qualified to give out blanket advice. However, after reflecting on the need for more published literature about PDA, I agreed to write about our family’s experiences, offering some ideas about approaches we used alongside some more general advice for all parents of children with SEND.

Our two girls also share their thoughts in the book and one of the chapters is written by Sasha’s Dad. He shares his thoughts and feelings as a male parent of a PDA child and we hope this might help other fathers and carers open up about the unique aspects of living with a PDA child.

Over the last 12 years, I’ve had many messages from parents saying they feel less alone and isolated since reading my blog, However, there are still many families who haven’t heard about the PDA presentation of autism. Many practitioners have heard about PDA but maybe don’t fully understand, because they only see individuals for short bursts of time, so don’t experience PDA 24/7 as families do. My hope is the book will help all of these people to understand PDA better.

Difficulties with school

One of the chapters in the book entitled Not Fine in School, summarises the difficulties we faced once our daughter was no longer able to attend mainstream school. The number of children struggling to attend school seems to be rising rapidly and I strongly believe this situation should be investigated as a matter of urgency. Attempts to force attendance at any cost do not take into account the underlying issues with the system and the lack of suitable provision. Blame and pressure are heaped onto families who are already living with extreme levels of stress, which can lead to mental health problems and breakdowns. One of my goals is to shine a light on this situation and to help other families feel empowered to do what is right for their children.

Many parents of PDA children are judged unfairly when their children are unable to comply with demands. PDA is not a case of lazy parenting and I hope our words in this book have helped explain the need for flexibility and understanding.

PDA in the Family: Life After the Lightbulb Moment is out now in paperback, ebook and audiobook. By Steph Curtis and foreword by Julia Daunt, adult PDAer.

Win a copy of Life with PDA

If you can’t get the form to display, you can also find it here

*Affiliate link.

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